Hanging On

"Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all"          Emily Dickinson

Where do I begin after such a long time? I apologize for not updating for nearly three months. I want our story to be told, and I do believe that it's helpful for it to be out there, but I procrastinate terribly sometimes. It's not always easy to share, and sometimes I put it off until my guilt manages to outweigh my hesitance. I'm trying, though. I'm committed to keeping the conversation about mental health going. Forgive me when my side of the conversation lapses a bit. 

Most of the last three months has been good, relatively speaking. Compared to where Hope was several months ago, the last couple of months have been good. In fact, there was a period of time when we all agreed that she was the best we've seen in more than a year. She was social and interactive (relatively speaking, but still...), she was playful, she laughed, she often genuinely seemed to be enjoying herself. Friends kept telling us that they couldn't believe how good she looked. In fact, there are some people in our lives who had never seen her look like that, and didn't know she had that in her. I think sometimes people just assume that by nature, she's quiet, not very social, not very talkative. They don't understand that that's not her nature, and that's why we describe her as not herself when she's like that. Anyway, she has been quite animated lately. Life is never easy, she's never her old self, and all the things I mentioned in my last post apply to our lives, even in the best of times. Those "best of times" sure are sweet, though. It's the closest we get to normal, whatever that means, and it's the closest we get to having our old Hope back.

In the last few weeks or so, we've been faced with the fact that she's slipping again. She's not at a low point right now; if you had last seen her several months ago, you'd still think she looks better now than she did then. Compared to how she's been the last couple of months, though, she's definitely going downhill. She always needs significant time alone, but when she's at her best, she enjoys being out and about for a few hours at a time. Right now, she can still tolerate being around people, but it's getting harder. She's less likely to enjoy herself, and becomes annoyed pretty quickly. (Though at this point, she's still able to put on her polite face, and her irritation isn't visible.) As she slides down that ugly hill, she will be less and less able to interact. Eventually, she gets to a point where she does almost nothing but sit motionless and expressionless, all day every day. She will respond if spoken to, but does not initiate conversation. She will be a hollow shell of herself. We're not there, and I'm so thankful for that. It is hard to know that's where we're headed though.

The things we can actually see and evaluate most clearly, more than the social things I described above, are the cognitive symptoms. Even when Hope is at her best, she has problems with executive function, working memory, motor planning issues, etc. At her highest points, though, she is relatively functional. As she starts to slip, we see these things become bigger and bigger. One recent example of this is the fact that twice in the last week or so, she walked away from a sink with the water still running. It simply didn't occur to her that she should've turned it off. Another example happened last Friday, as she answered a phone call by turning on the phone and simply holding it to her ear. After several long seconds, I said, "Say something!" Afterward, I asked her why she didn't say anything when she answered. She looked at me like that was a stupid question and said, "I was waiting for him to say something. He called us." I asked her how he was supposed to know she'd answered, and she said she didn't understand what I meant. I said, "When you answer the phone, you say 'hello.' That's how they know you've answered." She just stared at me, blankly, and finally said, "Oh. Yeah..." This child is 14 years old. It's not like she's never answered a call before. It's not like she hasn't been picking up play phones and saying "hello" since she was two. This time, though, the association between those things in her brain just weren't there. A few days ago, I realized that the back of her hair was matted into a baseball sized mass, which I assume was developing underneath for a while, and I didn't notice it until it was large enough that it couldn't be covered by a layer of hair over it. I haven't been brushing her hair recently, because she'd been doing a good job, but I guess we're back to that again. 

As for the all-important positive symptoms, I can't say if there's been an increase. She's still not talking about that. For four months now, she's denied having any hallucinations. With her history, we know that's unlikely to be true. She is still sticking to I'm not hearing or seeing anything, and I wouldn't tell you if I was. She knows how to play this game. She knows what hospital admission criteria are. She's tired of hospitalizations, and she knows what to say to avoid them. Is there a chance she's telling us the truth? Perhaps. Given her history, the severity of her symptoms, her resistance to antipsychotics, etc., it's not likely. We would love to believe that she's telling us the truth, though. We hope for the best case, but follow all procedures for the worst case, so that we can keep everyone safe. 

If we're Facebook friends, you may have seen an article I shared a few days ago. It was written by a woman whose son has schizophrenia. If you didn't see it, and you'd like to check it out, you can find it here: http://www.usatoday.com/story/news/nation/2014/11/16/schizophrenia-mental-illness-treatment/18647395/. When I posted, I shared a paragraph that really resounded with me. Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. "Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again." I don't know how to explain it to someone who hasn't lived it, but this is how we feel. I hesitate to use the word "death," because I don't want to minimize the pain of any parent who has ever lost a child. Please understand that I use that word because I can't find another way to describe the pain and anguish of watching your child cease to be who she once was. I do not use it lightly, though, and I don't mean to suggest that I know your pain.

Whatever word you use, whether it be death or loss or something else, it is painful to watch someone you love slip away. Much like a person with dementia or Alzheimer's disease, our Hope loses herself when her illness is at its worst. As the quote above mentioned, it happens over and over. Schizophrenia cycles, and while we cherish the times when she's at least recognizable as some form of our Hope, we always know that we're going to lose her again. There is some comfort in knowing that we'll probably get her back, in time. This is not assured, though. With repeated psychotic breaks, people often decline over time, and they don't always return to as high a level of functioning as the last time. On top of that, there is the constant fear that one day we'll lose her altogether. The suicide rate in schizophrenia is frighteningly high, and she has attempted before. We worry that she'll just get tired of it all, and decide she's done. Even if we get to keep her here on this earth for a very long time, and even if she cycles back around to a better place again in a few months, it is still hard to watch her go downhill. 

For right now, we are trying to soak up what is still a pretty decent version of our little girl. It is hard every day, though. I've always liked the saying, "It doesn't matter if the glass is half full or half empty. Be grateful that you have a glass, and there is something in it." I try to live that way. It is so, so hard, though, to be grateful that there's something in your glass while watching it slowly drain away. How do you not focus on that decrease? I do enjoy the time I spend with my girl now. It's not always easy. She's not always pleasant. She often resists being around others, so it can be hard to spend time with her. But there are times, and I soak up those times. It hurts, though. When she smiles a real, genuine smile, my heart leaps. But then it sinks with worry about how much longer it'll be before it's gone again. My hopes are built on little things now. We're only a week from Thanksgiving. Hopefully, she'll still be herself enough to enjoy visiting with extended family. What about Christmas? It doesn't seem likely that she'll decline slowly enough to still be functional by then. It's also not realistic to think that she'll be on the upswing by then, either. There's a good chance that Christmas will pass with her in a pretty flat state. I hate to think of that. I love the Christmas season, and I love doing it with my family. I want to bake cookies, and watch movies, and look at Christmas lights, and shop, and wrap, and commit random acts of kindness... the list goes on and on. It all feels so weird when we have to do it as a family of three plus one, rather than a family of four. I don't want to make it sound like she's ever excluded, but sometimes she's just not present, even when she's there. It feels sort of like the three of us are carrying around one of those life-size cardboard cutouts. Or like we're living some kind of weird Weekend at Bernie's story. We try to make things feel as normal as possible. We try to teach our son that it is possible to choose joy and to enjoy experiences even when everyone isn't participating. We try to remind ourselves of that fact. It's sad, though. So many times, in so many ways, loving someone with schizophrenia is just really sad.

I don't want to write a novel, but I want to touch on one more thing. People often ask how they can pray for us, and there's something specific right now besides just Hope's health. (Though that is, of course, always the big thing.) We're faced with really bad news for this coming year's health insurance situation. Our plan will no longer be carried, and we'll be forced to switch to a plan that covers a much smaller number of providers. We have two different options, and each covers a major hospital network in our area, where our old plan accepted both networks. No matter what we do, we'll lose at least one member of Hope's current team. It'll probably end up being the therapist that we love. We'll also be in a situation where only one local psych hospital is in network, and that's scary. When a hospitalization is necessary, they start a bed search, and you end up wherever they find a bed first. There is no choice in this matter, so we very well could end up with out of network hospitalizations. Either of these new plans, with drastically reduced numbers of providers, is still going to mean a huge increase in monthly premiums. I don't mind talking numbers here, since insurance is no longer personalized and people are all charged the same based on age, gender, and location. Last year, we paid a little over $1,200 a month. This year, that same plan cost us a little over $1,500 a month. The new one will be $1,879. Yes, you read that right. In order for us to get the coverage we need for our very special girl, we will be paying nearly nineteen hundred dollars a month, for four people, for premiums alone. This is before copays, before coinsurance, before non covered expenses, and this is a plan with drastically reduced numbers of providers, and the forced loss of a loved and trusted therapist. On top of all of that, we got a letter in the mail today saying that Hope's psychiatrist has to contact them and basically convince them that she has to be on the particular med that she's on, or they won't cover it in 2016. The whole thing is a train wreck. The state of our current insurance system is a wreck. I'm not one of those who blames the Affordable Care Act, the president, or whomever else people are blaming these days. The ACA did some great things. It was an attempt to fix a badly broken system, but the system is still rather broken. I have no interest in politics whatsoever, but have been dipping my toes into the world of advocating for policy change, because people all over this country are going without needed care, or facing financial ruin in order to get the care. Change happens slowly, though. In the meantime, we have to manage to pay astronomical costs for Hope's care. It's stressful. It's stress on top of stress. 

I hate to feel like I'm always a bringer of negativity. I want to leave people with hope. There is always good to be found, if you look for it. Since we're so close to Thanksgiving, I want to tell you just a few of the countless things for which I am thankful. I am thankful that we were able to have a period of relative stability. I am thankful that our Hope has been at home for nearly 5 1/2 months straight -- the longest period between hospitalizations since the onset of her illness. I'm thankful that, despite the stress over costs, we've never had to decline any treatment, therapy, or med that we thought might be helpful. I'm thankful for blessings that far exceed what a large majority of the world's population can even dream. I'm thankful for a husband who works hard. I'm thankful for a daughter who shows me every day what strength is. I'm thankful for a son whose tender heart makes me a better person, and whose laughter fills my heart up. I am thankful for extended family, and for friends, many of whom are at least as close as family. I am thankful for you, wherever you are right now, spending time reading about my little family, and hopefully taking something away from our story. More than anything I am thankful for the oceans of grace that my Savior lavishly pours out on me. And on my hardest days, when I am completely torn apart by my daughter's brokenness, and when I fear that her days on this earth will never be easy or fair or comfortable, I am thankful for the knowledge that someday she will be made whole again. 

I hope you have a wonderful Thanksgiving holiday. The kids and I will be heading to my hometown to spend some time with extended family. Unfortunately, my hardworking hubby will not be able to join us, but the way I see it, that just means we'll have to turkey all over again when we get back! We've canceled appointments for a week, and gotten permission from psychiatrist and pharmacist to get a little longer supply of meds than we usually get -- you know, just the regular things families do before they travel -- and we're looking forward to seeing some of our very favorite folks. 

Two Years

"Some days the memories still knock the wind out of me."

Two years ago today, my family spent the day at my son's first football scrimmage. We chatted with the parents around us, we cheered, we laughed, we soaked up some sun and fresh air. Sure, we had a newly twelve year old who had been pretty moody lately, and chose to sit under a tree away from the crowds, but hey, moodiness comes with that age, right? You roll your eyes and move on. We were happy. Life was beautiful. We had no idea that that very night, our life would change forever. We had no idea that that day was the last one we'd ever spend so carefree. If you know our story at all, you know that we didn't discover Hope's illness in a gradual or gentle way. What she had been living with for a while could no longer be contained, controlled, or hidden, and it exploded. Everything was ripped out from under us in a moment. We didn't fully understand what was happening, but we knew that life would never be the same.

Today, I grieve for that family. I'm sad for what happened to them. To us. I am hurt and angry and bitter. Some days I feel hope. Some days I feel sadness. Some days I don't feel much of anything at all. But today, everything in me is a screaming, thrashing, raging mess of pain and anger. And underneath that, there is a sadness so deep and dark that it threatens to swallow me. I wanted the world to know what our life is like, right? I promised to tell this story, because it needs to be told. Well, sometimes it feels like this. It's so raw and ugly and painful that I don't want to shine a light on it. I want to hold it all together, and show hope and positivity, and inspire others to feel those things, too. The truth, though, is that some days, I can't find that anywhere in me. Some days it's all I can do to keep putting one foot in front of the other, because the world is still moving, and somehow, I must keep moving as well. 

My life now is very different than the life of that woman from two years ago. There are psychiatrist appointments (at least monthly), therapy appointments (at least weekly), weekly blood draws, and weekly med pick ups. There are phone calls a few times a month to the psychiatrist's office, weekly calls to the pharmacy, and regular check-ins with Hope's case manager at Magellan (the contractor that BCBS uses for mental health stuff.) There are currently at least several weekly calls, emails, forms, record releases, etc. for the current attempt at getting Hope in with a specialist at a large university research hospital. (Before that, there was a similar song and dance for partial hospitalization, and before that, the attempt at residential. If it's not one thing, it's always another.) There are regular visits to Hope's pediatrician who helps manage and monitor the physical effects of the high risk meds. There is always, always at least one insurance or billing issue at any given time. (When you have as many things as we do, you are bound to see some mistakes. We've seen things as weird as bills accidentally put in hubby's name because they switched the patient and policyholder information, and a whole slew of ordinary things like bills being denied because they used the wrong code, or because they said outpatient when they were actually inpatient, or because they sent the claim to the wrong address.) When this happens, it's on us to make the calls to the provider and to the insurance company to find out where the mistake is and have that person fix it and resubmit, and it always takes weeks of follow-up calls. We have seen a schizophrenia specialist to help us determine a treatment plan, neurologists to check for physical causes for symptoms, cardiologists to watch for damage from high risk meds. We have support group meetings for families of individuals with mental illness. We have meetings and activities for my son's support group of children with ill siblings. Life is full of appointments, phone calls, emails, etc. 

Besides managing those things, my ordinary daily life is spent managing this illness. Schizophrenia used to be called dementia praecox, which means premature dementia. Because schizophrenia is unfamiliar to many people, I think many don't understand that beyond the hallucinations and delusions there is a debilitating illness that looks like dementia. I assess Hope's mood and functionality constantly. I baby-step her through her day, because she doesn't remember to do things for herself, and when she does remember, she doesn't have the oomph to make herself get up and do them. I have made charts and lists of things like self care and household chores. I repeatedly remind her to look at those things, because she won't without prompting. Then I go through each item individually, because even if she says she's done everything on the list, chances are she skipped over some things. Without my intervention, her hair becomes completely matted underneath, because if she does brush it, she only gets the top part. I'll find that she doesn't know where her toothbrush is, and then discover that it was never unpacked after her last trip to the hospital, and that she hasn't brushed in two weeks. I remind her that you have to think about the weather when you get dressed, because even if you love that shirt, it's not weather-appropriate to wear a long-sleeved thermal when it's 95 degrees. I'll point out that if she wants to wear short and a tank top, she might want to do some shaving. She leaves a trail of messes wherever she goes, because anything she touches is just left lying where she used it. I tell her that she has to come back into the kitchen and close cabinets after getting a snack, or close up the bread that she used and then left open on the counter. I tell her to pick up the nail polish that she used and forgot to close, which has now dried up. I check the stove if she uses it, because she doesn't always remember to turn it off. I peek into her bathroom to make sure the toilet is flushed, because it usually isn't. I remind her to put her seatbelt on, which she only occasionally remembers on her own. I remind her to close her door when she gets out of the van, because sometimes she just gets out and walks away. 

All of these things have to not only be done for her, but they have to be done in a way that preserves as much dignity as possible. She's 14 years old, and even if there are many ways in which we have to treat her as if she's 4, she should not be made to feel that way. It's a delicate balance, because she has special needs, but she does not have any intellectual or developmental delays. It's not like she has the cognitive capacity of a young child and wouldn't mind being treated like one. She is very much a teenager, but she's one who happens to be unable to function like others. We have to manage that while keeping her dignity intact. We may need to tweak or decline plans that would keep us out too late, because her sleep must be carefully guarded. We don't embarrass her by giving that as a reason, though. Her motor/planning skills are impaired, and it causes her to spill or drop things more often than others do. It would be condescending to tell her she's not allowed to use a regular glass, but it's kind of fun to let her pick out a fun Tervis or lidded cup. (I happen to carry a Tervis almost all the time myself.) She can't be left alone, but it would be embarrassing for her to have a babysitter at an age where other girls are babysitting. So hubby and I almost never go out together, and only leave her occasionally with our one local relative, because hanging with family is not being babysat and doesn't seem weird. If we're around other people, and I've asked her to do something that she has clearly forgotten, I'll prompt as casually as possible. ("Oh, I'm glad you didn't grab my purse from the van yet, because I also need you to get the such-and-such while you're there.") 

As you can see, caring for Hope is a 24/7 job. But, of course, that's not all there is. Adding all of this to our life didn't make everything else go away. I still have to do all of the things that everyone does -- I cook and clean and shop and manage our home and lives. Hope isn't my only child, I have two, both of whom I homeschool. School takes hours of our day, plus additional prep time and such for me. Baby boy plays sports, takes music lessons, acts in a theatre group, takes classes, belongs to clubs, and spends time with friends. Baby girl doesn't do as much socially, but does participate in youth activities at church and is the stage manager for the kids' theatre group. Our family volunteers. Hubby works 50 hours a week. I work as much as I can, though sometimes that amounts to only a few hours a month, depending on how our month has been. (I do computer-based work from home, and have the flexibility to work as much as or as little as I want. Our ideal would be for me to not work at all, but the medical bills never stop coming.) When I have spare time (as if!), I research, I read, I educate myself. 

Two years ago, my life was mine. Now, schizophrenia has taken over. In every moment, it is there. Over time, we have learned that it's possible to smile again. There are moments of happiness. They aren't the same as the carefree happiness we knew before, though. I posted the other day on FB that I had the best day. We went to a concert of one of the little one's favorite Christian bands, and he had so much fun, and smiled so big, and worshipped so sweetly. It was a great night. What I didn't mention was that Hope mostly sat there, arms crossed, looking annoyed, and then fell asleep. (Seriously. At a live concert. Asleep in her chair.) Even when we're happy, we aren't happy the way we were before. It will never be like that again. Our child has a severe illness for which there is no cure. At best, she will be "functional," which means maybe holding a part time job and maybe living alone, but with support. She will always need care. We will always worry. She has been both homicidal and suicidal, and I don't think I will ever take another breath without those fears somewhere in my mind. Even if she someday achieves stability that so far has seemed out of reach for her particular case, she will still not be "normal." We will never stop fearing for her. (And honestly, to some extent, we will never stop fearing her.) I am heartbroken for this life that is ours, and grieved for the one we used to have. I am angry at what each of the four of us has lost, and at what we must each bear. 

Life is just hard sometimes. And while I want to leave you with some lovely, flowery words, I don't have any today. I am just a mess of angst. This is life, too, though. This is real. This is raw. This is honest. Maybe sometimes we just need to see each other's ugly mess, so we can all be okay with the same in ourselves. 

Ever the Same

"She says nothing at all, but simply stares upward into the dark sky and watches, with sad eyes, the slow dance of the infinite stars."          Stardust, Neil Gaiman

Sigh. Where do I start? She’s slipping, folks. Over the past month, there has been a clear, undeniable decline in our Hope.

It’s been almost six weeks since my last update, and things are not as good as we'd hoped. Within weeks of returning home, Hope started having occasional hallucinations. It wasn’t big things. There was a visual hallucination one day, and then she started having auditory hallucinations a few times a week. Needless to say, we were disheartened. However, we know that some people respond only partially to antipsychotics, and will experience some psychosis even during their best times. That’s better than not responding at all, which is where we were for a year and a half, so we tried to hold on to the positive. At least there was some response. At least “the voice” wasn’t back, just some random, harmless hallucinations. We were cautious and watchful, though. It seemed that if she were going to experience any hallucinations, it would be the one that has always been the strongest and most stubborn. We expected that if any psychosis were to push through the meds, that voice would lead the charge. Her therapist agreed that it seemed strange, and we all tried to get her to admit that perhaps she was more symptomatic than she was telling. She denied. We observed. That’s all we could do.

The reason we focus so much on this one symptom, “the voice,” is that it’s the scariest. Because of the things it says to her, and because of the strength of its influence on her, she is unstable and potentially dangerous when it is present. When our last round of med increases seemed to finally stop it, when she cried and cried like a person who was genuinely grieving, that was the biggest moment in her illness to date. This one symptom makes the difference between her being safely outpatient or needing a higher level of care. We’re in a difficult place right now, though. She’s telling us that she’s not hearing it, but also saying that if she did, she wouldn't tell us. She bluntly says that she will never risk us taking it away again, and that she would lie if it came back. We have no way of knowing where we are. Maybe she’s not hearing it now. Maybe she is and always was. Maybe it did go away briefly when we thought it did, but quickly pushed back in as soon as her body adjusted to the new dose. We (her parents and her therapist) see indications that she may be responding to stimulus that we can’t see or hear. A couple of times, I've pushed pretty hard for her to just be honest with us, and she has even gotten teary and looked like she was thinking of saying something. She never does, though. Usually, she sits in stony silence when we try to discuss it. She knows that admitting to this symptom would likely mean hospitalization, at least for a while, and more importantly to her, she knows that we would do all we could to take it away. So, when we can get her to say anything at all, she says it’s not there. She continues to deny. We continue to observe. This is our dance.

Over the past month, we have seen an undeniable shift in Hope. It’s not just a matter of psychosis, or whether or not she’s hearing the voice. It’s an all-around decline. Schizophrenia is an illness of remission and relapse, so these declines are par for the course. We are always prepared for things to get worse again, because they always do, and they always will. Even Hope’s most stable periods are quite shaky, so we don’t get very high highs, but there is still a world of difference between those times and the lows. And the lows are hard, even though we expect them. At first, we hope it’s just a bad day. Then we hope it’s just a bad few days. Maybe she’s extra tired. Maybe it’s hormones. Maybe she’s not feeling well. Before we know it, though, it’s undeniable. Over the last few weeks, the change has been pretty dramatic. She’s become more withdrawn, more difficult to engage, more easily agitated when we try to engage her. It’s very difficult to get her to take care of herself, to complete household chores, to complete school work. (She will be schooling through the summer in order to complete this grade.) She looks vacant much of the time. She will sometimes just sit and stare for hours. She doesn’t initiate conversation, and responds as briefly as possible when addressed. She sits in her bedroom or our family room, declines our invitations to join the rest of the family, and leaves the room if we try to join her. I make her attend activities and get out of the house, but she strongly prefers not to, and usually isn't very pleasant while we're out. This is the most flat she’s been since last fall, and it’s just really hard to watch.

For privacy reasons, I don’t post pictures on this blog. I don’t even use her real name, I certainly don’t want to plaster her face all over the internet. I'll put a few pics on Facebook, though. If you're friends with hubby or me, you can take a look at what we're seeing. I don’t want to seem like I’m exploiting her in any way, but I really want people to understand what she’s going through, what this illness does. She holds together as well as she possibly can in public. She has gotten very good at appearing to be “normal.” She works with her therapist on appropriate social behavior. Besides that, she just doesn’t want to stand out (she’s 14, after all!) and she also isn’t willing to show weakness by allowing anyone to see her looking wounded. Because she does her best to hide symptoms, it’s not uncommon for people to tell me that they don’t think she looks unwell. I know that most people aren’t questioning my version of events, they’re just processing what they’re seeing. Sometimes, the phrasing even shows that they're complimenting her ability to be strong. Sometimes, though, the phrasing seems skeptical. People will tell me that she looks like a regular teen, or that all teens display the things she does. Those statements hurt me, because I feel like the person assumes I’m blowing this all up in my head. Perhaps that’s not at all what they mean, but it feels that way. I can assure you that we have far too many experts involved in her care to mistake typical teenage behavior for a severe mental illness. Beyond my own hurt over these statements, I want people to be aware that you can’t always see mental illness. It is so common, when there is a crime or a suicide, for people to say, “I had no idea. (S)he seemed so normal/happy/healthy/just like everyone else.” Many people with mental illnesses are masters at putting on a “happy” mask in public. Hope is very good at this. It is usually only those closest to her that see her unmasked. To those who know her really well, though, it’s quite visible, even when she’s putting on a pretty good show. It’s heartbreaking to watch her go through so much, just to blend in and keep her vulnerabilities protected. It’s even harder to watch her go through all of that, and then hear people tell us that she looks fine, and that we just need to let her be a teenager. 

The current state of things here is that Hope is in a partial hospitalization program. The program is the same as inpatient, except that she’s home evenings and weekends. Each day, she does school, several group therapies, individual therapy, and is seen by a psychiatrist. We don’t know that this will change anything for her, but her outpatient therapist thought we needed to try something more than outpatient, due to the significant decline we're seeing. We don’t have anything to lose. Basically, what were doing is twofold: 1) She is getting significantly more therapy there than what she has in a week’s time on the outside. 2) She’s being seen by a really good psychiatrist. The therapy may or may not do anything for her. Her willingness to participate varies. This is a good therapist, though, who knows her outpatient therapist personally, and who really gets Hope. Just maybe, with all the time she’ll be spending with her, she’ll get her to open up about some things we think she’s hiding. The psychiatrist is a huge thing, too. He’s one of the best we’ve personally encountered. He has treated her before and is familiar with her case, as this partial hospitalization program is related to an inpatient program where she has been. He trained at a really well-known program, under an adolescent psychosis specialist who we have been trying to get in with. He knows his stuff. He’s also consulting this specialist on Hope’s case to get her opinion on what else we can do with her meds at this point. We don’t know that she will come out of this treatment any better than she was, but we will at least be confident that we’ve tried all of the right things for her.

Basically, all of this is a really long-winded way of saying that things aren’t great here, that we’re not sure how to fix them, but that we’re doing all we can. It’s not good, but it could be worse. It has been worse. It may get worse. We’ll take it as it comes. I'm sorry I don't have better news. It actually makes me really sad to give bad news, because I know that so many people are rooting for our girl. This is real, though. When I decided that I needed to keep a blog and talk openly about life with mental illness, I decided that I would be as real and honest as possible at all times. I don't have nearly as much good news to share as I would like, but that is often the reality for families who have an ill member. Please, go out today and find a way to show love to someone you know who is struggling. It may make all the difference in their ability to make it through the day. 

I'll try to update again soon, especially if there is any change in our circumstances, for better or for worse. Much love to all. <3

And Finally, Some Good News

Rejoice in hope, be patient in tribulation, be constant in prayer.          Romans 12:12 (ESV)

Our life these days never ceases to surprise us. The one thing we know is to always expect the unexpected, and somehow, we're still caught off guard. Every once in a while, though, that's not a bad thing.

Early last week, and after the fourth increase in her antipsychotic, Hope stopped hallucinating. If you're at all familiar with our story, your first question is probably how we know that she's telling the truth this time, right? Well, she went from being her usual, coolly removed self to being a sobbing, emotional wreck. In the past, when she's told us that she's not hearing the voice, she's said it casually. This time, she completely melted down. She (who shows emotion very infrequently these days) cried for three days. She panicked. She said she's not ready for the voice to be gone, and that she doesn't know what to do without it. We were worried that if meds ever did start to work for her, we wouldn't know how to believe that she's telling the truth, but boy, was it clear! It has now been 9 days since her last auditory hallucination, and 8 days since her last visual hallucination. She also reports that she no longer feels homicidal.

I can't even believe that I am writing these words, after such a long battle to get to this point, but our girl appears to be psychosis free for the first time in almost two years. I still can't quite grasp that. (Side note: When I say psychosis-free, I guess I really mean hallucination free. Delusions are also psychosis, and we don't actually know where she is right now, as far as grasp on reality, or whether or not she holds appropriate beliefs about the world in general. It hasn't been the primary focus of our efforts, as it simply isn't the most important right now.)

Once this change happened, we had to start reevaluating what that means for her current placement. Residential treatment was recommended because her providers believed that outpatient wasn't a high enough level of care with the symptoms she had. With a change in those symptoms, we had to rethink that. Residential is essential in some cases, but should be used with caution. The kids there have severe behavioral concerns. Many have histories of violence, sexual acting out, drug and/or alcohol use, etc. When you're looking at placement of a kid like Hope, who doesn't have any of the above, you really have to carefully weigh the positives against the potential harm. We had arrived at the point where pretty much all of the providers in her world believed that it was necessary. However, if she is, in fact, hallucination free, is it still necessary? After talking it out with her team at the hospital, and her outpatient team, we determined that she didn't need to be thrown into that situation at this point. We would risk her being either traumatized or hardened by it, neither of which are good for her. We would've done it as a last resort, if she were too dangerous to be anywhere else, but she really does seem to be responding to this med, and therefore not too dangerous to be at home. 

On Sunday, the day before her 14th birthday, we brought our Hope home. She was only away for two weeks, which we've been through before, but this time seemed so much longer. It wasn't just a two week hospitalization; it has been a two month process. She was inpatient for two weeks, then at home but with us working hard on figuring out residential placement for a month, then inpatient again for another two weeks. It has been two months since we were able to just be, and since we were last able to picture our summer happening as a family of four. 

Not to negate all of the happiness above, but life is not all butterflies and sunshine. Our child still has a very serious illness. We rejoice that at least in this moment, she is med stable, but what exactly does that mean? Antipsychotics control psychosis, which is just one component of schizophrenia. There are many other challenges and deficits that remain. Even if Hope does continue to show response to meds, we are faced with at least some of the following symptoms of schizophrenia: executive functioning deficits; deficits in working memory, and organizing thoughts; impaired motor skills; emotional flatness or lack of expressiveness; an inability to start or follow through with activities; speech that is brief and lacks content; a lack of pleasure or interest in life; difficulties with social cues and relationships; neglect of self care... the list goes on and on, and the ones I listed are just the ones we've already encountered in Hope. 

Honestly, even our best-case-scenario for Hope means that life will never be easy. We want to aim high, and help her achieve all that she can, but we know that our goals for her will be different than what we dreamed of before she was sick. All of our goals now are for her to achieve the most normal life she can, knowing that it still won't be "normal." Most individuals with schizophrenia require some form of daily support. It's not realistic to believe that she'll be able to completely manage her own life, but we can do our best to give her all the skills and support she will need to eventually live independently -- with support to manage things, but maybe at least in her own place. Less than 15% of people with schizophrenia are employed. We can give her all of the resources and training necessary to support her working at least part time, though. We know that working provides a person with a sense of worth, connects him or her to the community, and provides life with a sense of purpose. Some of the things that we (her family and her therapist) will work very hard on are: teaching life and self-care skills, so that she has the best chance of some level of independence; educating about the need for medication compliance, so that we lessen the risk of noncompliance in the future, which is one of our biggest long-term worries; teaching social skills, providing ample opportunities to practice these skills, and realistically, forcing interaction, because she pretty much always chooses not to interact when she has an option; educating about the pitfalls of drug and/or alcohol abuse, which is obviously always a bad thing, but is especially common in those with mental illness; watching for signs of increased suicide risk, as different studies show that 20 - 40% of people with schizophrenia attempt suicide, and around 10% succeed (this is especially scary for us, as Hope has already attempted once.) Life will never be easy for Hope, and this means that life will never be easy for us. Sometimes, I'm exhausted by that thought. Then I remind myself that if the only options are working hard every day to support her, or living life without her, it's really a very easy choice. 

As far as where we are at this moment, I suppose we're just trying to get our bearings. This is the first time we've seen Hope hallucination-free in almost two years. She hasn't just gone back to how she was two years ago, though, because her illness is still so all-encompassing. We don't know how long she'll be stable, what will happen when the psychosis inevitably returns (will she be honest and let us know right away? will another quick tweak get it back under control? could she become very dangerous before we have any idea that it's happening?), and how we handle it when it does. We're trying to put together treatment plans for many other things that we just couldn't focus on when her psychosis was the top priority for so long. We're adjusting to having her back at home, which is what we wanted, but at the same time, is not always easy.

At this moment in time, we have a child who is very, very depressed. She is grieving the loss of the voice that was her companion for a long time. While we understand that this voice was a result of a brain malfunction, she experienced it as a separate person, and was really the most important person in her life. Now that it's gone, Hope doesn't know what to do with herself. Her grief has turned from frequent crying to a deep, quiet depression. We understand that she must go through the same grief process that accompanies any loss. Meanwhile, we're watching very carefully for med compliance (she has stated that she knows she could fix it if she'd just stop taking the meds, and she has been noncompliant in the past by both checking meds and by purging after taking them) and watching for any signs that she may harm herself (again, she's tried it in the past, and she is incredibly depressed and hopeless at the moment.) She moves very little, speaks very little, and when pushed to do either, she's not very pleasant. She's not engaging much right now, but occasionally something will distract her enough to get her briefly out of her shell. We're thankful for those times, and hope that they will become more and more frequent as she works through her grief. 

We would appreciate prayers for: continued stability and further healing; our sweet boy, who is still struggling with his anxiety; our stamina, as this race seems endless, and sometimes we are so tired; financial provision, as this has been such an expensive year already; a peaceful home, as life with Hope can be stressful sometimes, and we didn't expect her home so soon, and while we're happy for that, it is an unexpected adjustment for her parents and sibling. Most of all, we want to thank you all for your faithful thoughts and prayers. While there is a long road ahead, and our days are still hard, we know that what we've just experienced is a huge, huge deal, and there just aren't enough words to thank all of you who are with us on this ride. Much love to you all!

Hoping for Daylight

"Even the darkest night will end and the sun will rise."          Victor Hugo, Les Miserables

I'm sorry I didn't get back sooner to tell you all how things went last week. I know that while many of you get information other ways, there are some for whom this blog is the main source of information about our family, and I try to keep up for that reason.

Last Monday, Hope was admitted into a facility a few hours from home that has both acute and residential treatment programs. As I said in my last post, she is not stable enough to be admitted directly to a residential program, but we knew that she'd meet criteria for immediate admission into the acute facility. I'll explain what the team in the acute unit is currently doing for her, and then we'll talk about what happens next. (Spoiler alert: We don't actually know at this point.)

Right now, Hope is in a secure, acute facility. That's the highest level of psychiatric hospitalization, and is reserved for individuals who are currently too unstable to be anywhere else. Because of her active psychosis, and daily homicidal ideation, Hope always meets criteria to be at this level. Several people have asked why -- if she is like this all the time -- hospitalization is so pressing now, and is being pursued harder than in the past, when we've sometimes gone months between hospitalizations. The answer is that we thought she was more stable then. We've only known since early April that none of the meds have worked at all, and that she was being dishonest about that. Since we discovered just how on-the-edge she's really living, there has been huge pressure to either find a way to stabilize her, or keep her somewhere more secure for now. Her outpatient providers just don't feel like outpatient is enough for her right now.

The good news is that the doctor who is currently treating her is doing what neither the doctor in the last hospital nor her outpatient psychiatrist would do. He is increasing her Clozapine. If you've been with us long enough to know about this med, you know that it's our best chance. If multiple other antipsychotics fail to help, the best thing you can do is try this med; a percentage of people who have not responded to anything else will respond to this. We started Clozapine seven months ago, have increased several times, and it has not affected Hope's psychosis so far. When two doctors told us that they personally wouldn't go any higher, we were crushed. Of course we don't want to just throw high doses of intense meds at our child! But what else are we to do? We know that if this doesn't work, the chances that anything else will are incredibly low. (This is because the meds in this class are all similar enough that if multiple ones have failed, there is very, very little chance that any of the others would work.) Clozapine is the best option, period. We also know that the official info on this med says that we can go a fair amount higher, so we're not asking for anything outrageous or unsafe. The hesitation by some doctors is her age. However, she is not yet at the max adolescent dose, so we're not trying to get them to do anything that isn't supported by the official info on this med. All we wanted was for someone to be willing to push on up toward the higher end of the range and see if she might respond. Is there a chance that she's in the 10 - 20% of people who don't respond to any meds, or respond only minimally? Yes. That's not only possible, but looking increasingly likely. Are we willing to say that at this point? Absolutely not! Meds are the one and only way to control psychosis. You can't talk someone out of a psychotic state any more than you could talk them out of diabetes; their bodies are malfunctioning in a way that only medication can help. Meds won't necessarily affect symptoms other than psychosis, and most people with schizophrenia are still quite impaired even if they're psychosis free, but controlling psychosis would give our girl a much better quality of life, and would greatly reduce her need for hospitalization. If we hit the point where we can't go any higher on her Clozapine, we'll essentially be giving up on meds. We won't say that, of course. We'll try everything on the market, on the crazy chance that against all odds, one of them happens to work for her. But we know that this is our best hope. That's why it has been such a big deal, and why we're so thankful that the doctor who is currently treating her has been willing to increase it. The bad news in all of this is that we've already done two increases, and she's still showing no effect. The good news is that we're still trying, and still hopeful. 

We don't know how long Hope will be in this acute unit. We're doing all we can to stabilize her. Despite the fact that we've never actually managed that before, it is of course the point of acute hospitalization. We hope that we'll hit the point where the med she's taking is at the right dose for her, and her psychosis breaks for the first time in almost two years. (Now, the fact that she's lied about it before makes it tricky, and I don't know how we'll decide whether or not to believe her if she says it's working. We'll cross that bridge when we get there, though, because right now she's being honest with us about the fact that it's not working.) It is also possible that we won't reach that point, and that we eventually get to where the doctors have tried everything they know to do with her meds, and they simply can't keep her forever. Where do we go from there?

Whether or not Hope has achieved more stability, she'll need to move on from the acute unit within at least the next couple of weeks. The average length of stay there is six to fifteen days, and she's already been there for six. I don't know what will happen, but there are basically three options for where a person could go after discharge:
- Home. This would be an option if she's stable enough to be safe at home with just outpatient treatment. Conversely, we could end up bringing her home even if she's still unstable, but acute can't justify having her there any longer, and a residential program won't accept her. It's so messed up that a person could be denied admission to a residential program because they're too sick, but end up at home by default, which is even lower security. 
- Residential treatment. If she has responded to meds, this type of program could help her learn to live as normally as possible with her remaining symptoms. Even if meds work, they'll only knock out the psychosis, and a person still needs to learn how to function as well as they can with a slew of other difficulties. The highly structured nature and frequent therapy of a residential program could be beneficial. Even if meds don't work, her therapist believes that residential treatment would still be beneficial. However, it would depend on the program's willingness to take her despite her ongoing symptoms, and whether or not they think they could do anything to help her.
- State hospital. This is the one thing we almost never discuss, and we would not go into it quietly. I'm throwing it out here as one of the things that could, in theory, happen to a person upon discharge from an acute facility, but I'm not ready to talk about it for us personally. I have mentioned here, on occasion, that the type of place that could serve a very ill person are the so-called "institutions" that barely exist anymore. Several mental health professionals who have treated Hope have brought up this option, at least in a "have you ever thought about this?" way. Basically, state hospitals are longer term but still high security, which is (in theory) how you bridge that tricky gap between "acute isn't long enough" and "residential isn't secure enough." Just this week, Hope's current hospital therapist asked if we'd ever talked about that option. The answer is that we are not looking at that option. State hospitals serve a purpose. I'm glad that there are still some in operation. Some people are either too dangerous to be in the community without risking harm to the general public, or too vulnerable to be in the community without being easy targets to be victimized in any number of ways. These places are not the horrible asylums that we think of when we hear state hospital, and they're not places where you just park someone for life and drive away. (They are never to be considered someone's residence, and they are always supposed to be actively working toward moving the person into the least restrictive setting.) Anyway, back to our specific situation. Hope is a minor who has parents who supervise her at all times. We believe this makes her neither dangerous enough to need to be kept out of the community or vulnerable enough to need to be sheltered from the community. 

The short version, not that I ever manage the short version of anything, is that we don't know what happens next. We know that we want Hope to be at home with us. We know that professionals whose opinions we value and trust have told us that she needs something more than that right now. We know that we are willing to do anything if we have good reason to believe that it will change her life for the better in the long run. As is so often the case in our lives, right now we can only take one small step at a time, and see how things play out.

I like to try to give specific prayer requests, and suggestions for how to help us. I hope you all understand that I'm not asking for or expecting anything from anyone. I like to include this information for those who ask, and also because I think it could potentially be helpful to apply to other situations, should you happen to know anyone else whose family shares any of our struggles. 

Prayer requests:
- Peace and comfort for all of us.
- Guidance - That we would know what decisions to make, and that her treatment team would know how to best help her.
- Healing. Whether it be through med response or the healing that we do believe is possible, please pray for Hope to be healed.
- Patience, as we struggle with being apart, with not knowing what's going to happen, with our interactions with each other.
- Please continue to pray for our baby boy, as his anxiety continues to be at a high level. We try to keep things as calm and normal as possible for him, but he's ten years old, and he fully knows and understands everything that's happening in our life. That has to be difficult, and during some periods of time, he has struggled with anxiety. Please pray for his peace.

How you can help:
- Local folks: Help me keep my sweet boy busy while his sister is away. He used to occasionally comment that he felt bad for a friend of his who is an only child. That sounded like the loneliest thing to him. Since Hope became sick, things have changed a lot, and they don't interact as much as they used to. He still loves her like crazy, though, and I know it's hard when she's away. All of our regular school-year activities have stopped for the summer, our days are less full (at least with fun stuff) and I don't want him to feel sad or lonely. If you have kids who are friends with mine, help me keep play dates and such on his calendar. Just also try to keep in mind that I'm pretty busy sometimes, too, and that I'm not trying to avoid you if it takes a few tries to figure out a time we can get together.
- Tell me what's going on with you. I love that people ask about Hope, but I also want to hear about you! I don't want to talk all the time. I don't want to feel like my conversations and friendships are one-sided. I'm uncomfortable with feeling like I'm taking more than I'm giving in any situation. Tell me what's up with you -- the good things, the bad things, the mundane things. Please don't think that just because there's big stuff in my life that I don't care about yours!
- Send cards. Our girl's 14th birthday is in eight days. We can't say for sure (goodness knows our life is nothing if not unpredictable!) but there's a good chance she won't be home. There are very few things she's allowed to have in the hospital, but she can have cards, letters, and pictures. I thought it would be really cool to be able to shower her with cards for her birthday, since there is so little else I can do. This is a time-sensitive request, though. They probably need to be in the mail within the next couple of days, since her birthday is Monday, and we'd need to have them by Saturday. You don't have to say anything profound (in fact, she appreciates humor more than mushiness anyway), just the gesture would be appreciated. If you're interested in sending a birthday card, message one of us for our address.

I guess that's it for now. I'll try to be back again soon. Hopefully, we'll have things more settled in the near future, and know where we're headed from here. I hope you're all well, and enjoying the start of summer!